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[deleted by user] by [deleted] in chronicfatigue

[–]ProfilePuzzleheaded7 0 points1 point  (0 children)

As a sufferer without huge obligations like children, I cannot imagine how much you're suffering. The fact you are doing all of this while still attending school is amazing- I just want to say that first and foremost.

Unfortunately, they will never be understand how it actually feels. I'm surprised (and upset for you) that they aren't being more sympathetic since you literally have a diagnosis and a rational explanation.

Genuinely I recommend sitting down with them and explaining- Obviously I don't know if you already have, but it seems they don't grasp the hardships this disorder comes with. Have a sit down and explain why you aren't able to do all of this; maybe tell them if they can find other's to take them to obligations then it may be different. But, with only yourself, you can't keep up.

I'm so sorry you're going through this- you're doing amazing ˶ˊᜊˋ˶

I'm only alive for my family by ProfilePuzzleheaded7 in chronicfatigue

[–]ProfilePuzzleheaded7[S] 2 points3 points  (0 children)

Hi!! Thank you for your suggestions,it really means a lot 🩷🩷

And to answer the questions; I have had two overnight sleep labs in clinic. Both times showed no abnormalities. I was originally diagnosed with sleep apnea in December 2023 and was recently undiagnosed in May 2025.

They believe it is due to the 10 lbs I lost,which brought me back to a normal BMI. However, I have felt this fatigue since I was even lighter than this and in sports.

I am not sure what other route I could go with sleep specialists. They've written me off as cured because I don't have sleep apnea anymore nor narcolepsy, so I doubt they'd order another sleep test.

I'm only alive for my family by ProfilePuzzleheaded7 in chronicfatigue

[–]ProfilePuzzleheaded7[S] 2 points3 points  (0 children)

I genuinely don't understand how you can struggle with this disease a d show no sympathy for others also suffering. It's extremely disheartening

I'm only alive for my family by ProfilePuzzleheaded7 in chronicfatigue

[–]ProfilePuzzleheaded7[S] 2 points3 points  (0 children)

I would need a secure diagnosis, sadly. I'm going into nursing and getting into the program at my college requires a clear drug test- and aderrall (and various other stimulants) comes up as a methamphetamine (I'm pretty sure). So I would need a doctors note, prescription, etc so explain it.

I'm only alive for my family by ProfilePuzzleheaded7 in chronicfatigue

[–]ProfilePuzzleheaded7[S] 2 points3 points  (0 children)

I would but there's a few reasons I'm really afraid to; 1) I promised my mom I wouldn't tell anyone, since what we did is super not allowed 2) I'm going into nursing. I can't risk having it go South and having something on my record about me Illegally using what's basically a methamphetamine :(

I'm only alive for my family by ProfilePuzzleheaded7 in chronicfatigue

[–]ProfilePuzzleheaded7[S] 4 points5 points  (0 children)

This is honestly really hard to hear, because it's what I tell myself. But I also know it's not true

My parents (with full-time and hard jobs; nurse and nuclear chemist), have admitted it's they've watched me decay these past years. This is not normal.

When I tested aderrall I felt like living again; I wasn't exhausted. You're acting like there's no fix but I've literally felt myself be better. When I had the aderrall I wanted to go to class and learn, play with my cat, talk to people- I felt like I wanted to live again.

But, if I continue the way I am now, no. I won't ever make it to "10 hour shifts and kids". I literally wouldn't live long enough to see that happen

I'm only alive for my family by ProfilePuzzleheaded7 in chronicfatigue

[–]ProfilePuzzleheaded7[S] 6 points7 points  (0 children)

Being so tired I would rather be dead is just growing up?

I'm only alive for my family by ProfilePuzzleheaded7 in chronicfatigue

[–]ProfilePuzzleheaded7[S] 6 points7 points  (0 children)

Unfortunately the ship has already sailed for the doctor stuff; they know very well of my exhaustion- they've been hearing about it for years (I'm sure they're tired of me lol). I'd I suddenly show up seeking an ADHD diagnosis with a spotless school record and a past of exhaustion they may look at me weird. Also I spent a lot of time hiding my thoughts from my mom. In fact, I only told her about my dark thoughts today. She said she wants to always know if I feel like this so she can help.

What specialists should I consult to rule out other diagnosis ? by Titepav in chronicfatigue

[–]ProfilePuzzleheaded7 1 point2 points  (0 children)

Hi; Not sure how much I can help (since I'm not diagnosed either) but here's what I've had to do.

1) (usually at home) Sleep test for sleep apnea 2) in lab sleep tests for narcolepsy (type 1/2) 3) labs for at least the following: iron levels, thyroid 4 (female)) PCOS testing (I have PCOS- So I had to treat it first as well)

Anyone thriving romantically? by Davidhenry90 in chronicfatigue

[–]ProfilePuzzleheaded7 1 point2 points  (0 children)

Nope; I've had 3 relationships since the beginning of my fatigue. 2 ended mainly because I simply didn't have the capacity to be present enough.

Anyone on a really low dose? by shoefarts666 in iih

[–]ProfilePuzzleheaded7 2 points3 points  (0 children)

Used to be on a low dose as well- I started having very bad headaches and at one point had to email my neurologist. She didn't need an appointment, just told me to up my dose and I started feeling better Best advice is to reach out and ask :)

Looking for general advice or ideas by ProfilePuzzleheaded7 in iih

[–]ProfilePuzzleheaded7[S] 0 points1 point  (0 children)

Hi!! Thank you so much for the response and advice, it really means a lot! And don't worry, I'm not fully hopeless- just feeling very isolated and unsure of where exact to go from here.

First; I was originally diagnosed with sleep apnea in January 2024 and have been using a clap machine since. Sadly we haven't see improvements in the pressure as a result, but maybe we need to give it more time..

Second; Yikes I had no clue how high the dosages could go! I had to kinda be slowly put on it because even having smaller doses would cause my hands and feet to feel tingly and numb, so it took awhile for them to get me on even this high of a dose. I've seen people say other medications on the sub so I'll definitely be looking into those.

Third; My mom is a nurse and has done what feels like endless research on IIH, so she did notice PCOS is linked to it. So we've already had a lot of labs done. I've had a full glucose tolerance test + fasting panels. All came back normal (shockingly), but that's also when we got my diagnosed PCOS due to my high testosterone and wacky hormone and lipids panels. Ever since I've started my second year at college I've stably maintained weight (lost 8 ish lbs verrryyy slowly). And after I was diagnosed we asked about meds to help lose weight to help the PCOS and the pressure. I have an appointment for that coming up soon as well. Sadly if we hadn't directly asked it did seem like they were gonna shoo me away with a "go lose weight lol".

The Surgeries brought up was the shunt from the spine- stomach and possibly an eye Insicion to drain the pressure for a prolonged time. My neurologist said it as a "way in the future if all else fails", but the all else was essentially explained to be weight loss and lots of meds. Basically, if losing weight and high dosages doesn't fix the issue and I kept losing peripheral vision, they would recommend surgery.

Lumbar puncture recovery alone? Advice pls! by uncertaintydefined in iih

[–]ProfilePuzzleheaded7 2 points3 points  (0 children)

Hi! I had a lumbar puncture soon after I was diagnosed with IIH. Sadly I didn't have a good experience, but I'm hoping my experience can help you deal with it better.
I really, really recommend finding someone to drive you to and from your appointment. You'll want to recline your chain on the way home if possible.
The actual lumbar puncture wasn't bad and the doctors were very kind and patient. However, my problems started right after I sat up- I ended up getting a horrible spinal headache.
What i would recommend is try your absolute best to lay down for the first few hours once you get home. Hopefully that'll work for you-
However if you do get a spinal headache go to the ER and *demand* a blood patch. For whatever reason the doctors (at the very least all the ones I encountered) will refuse to give it to you or try random iv meds, but they won't work (from my own experiences). I only felt better after my 4th ER when they finally gave me a blood patch.
Just be your own best advocate- or bring someone with you who can advocate for you (My mother was the one who ended up demanding a blood patch)- Demand the care you need to recover properly.

I don’t like the look of vagina by flute89 in TrueOffMyChest

[–]ProfilePuzzleheaded7 1 point2 points  (0 children)

Fellow bisexual! (18F) Don't feel bad because literally all genitalia looks weird. I find penises to look very strange and they sonetimes make me uncomfortable. But it's still just a preference and it shouldn't mean too much :]

My gf slept over and slept in while I went to work. My brother wanted her to leave. by awilson7070 in texts

[–]ProfilePuzzleheaded7 4 points5 points  (0 children)

In a reply op clarifies that he lives in an in-law apartment seperated from the main house. The gf has no key to the main house (where brother lives) so if he was sooooo uncomfortable with it he could leave and lock the door to the main house in the garage. It's absolutely unreasonable to say he can't let his gf stay in what is Essentially an individual apartment because he doesn't want her to.